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National Celiac Organizations


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#1 deweyhughie

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Posted 23 March 2004 - 02:20 PM

In a post in this topic entitled "Leaving", some interest was expressed about a national celiac organization to get the word out about Celiac Disease to both doctors and potential patients.

While there are currently several "National" organizations, it is my opinion that they are not getting this job done - either because their focus is in other areas, or because they do not have enough resources.

Another contributing factor is the fact that there are SEVERAL of these organizations and they sometimes are in conflict with each other.

What are your thoughts about this? Do we need still another group? Or should we rally behind one particular group who has this as a primary mission? Is this issue (getting the word out) the main issue that needs attention?

Would greatly appreciate any input!
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Best wishes,
Dewey
Marion, IA

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#2 debmidge

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Posted 23 March 2004 - 05:44 PM

I think you're right and maybe the groups should merge and then make a TV commercial about celiac disease.
I've been thinking about writing a one page flier about celiac disease, just basic true medical text book info -- nothing but the facts -- and passing the flier out at the local supermarket parking lot, or under the wiper blades of cars (like the advertisements you get when you are in the store) or anywhere. I'd mention how one "gets" it, what tests are done for it, what you do for it (diet), why it's a difficult diet to follow and why you should be concerned (i.e., many people have it and don't know, it could lead to lymphoma of intestine, you can develop it at any point in life if you have the gene for it, and you or your loved ones could get it one day & then you'll want to be able to have resources, like gluten free foods, available).
All celiacs are Celiac Ambassadors to the world to inform and educate people. A little like evangelization of the masses.
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Husband has Celiac Disease and
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006
It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

#3 plantime

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Posted 09 April 2004 - 09:56 AM

Diabetes, epilepsy, HIV, even penile erectile dysfunction get lots of good press. The organizations that are supposed to help and educate us need to get some public info out for the masses. The problem is, no pharmaceutical company can market a pill to correct celiac disease. Money greases the wheels, and motivates people most. Maybe some of the manufacturers we depend on for gluten-free food will be willing to upgrade their advertising? I didn't know these companies existed until I found this site.
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Dessa

The Lord bless you and keep you; the Lord make His face shine upon you and be gracious to you." Numbers 6:24-25

#4 debmidge

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Posted 21 April 2004 - 02:41 AM

Hi All

I am doing what I can to get the celiac disease info out. I ordered "Full Life with celiac disease" from CSA, but I find it to be too long and boring for a non-celiac disease person to read. Well I ordered some of them and I have started leaving them in my doctor's offices (ob-gyn, X-Ray lab, chiropractor, etc.)

I have also written my own 1-page flier based on celiac disease info as found in CSA literature. I condensed it to one page and made it read like an advertisement. I've been leaving them in stores. I handed one to a mother of a Girl Scout who was selling cookies in front of our local supermarket. She didn't know what celiac disease was (I was explaining to her why I couldn't buy the kid's cookies).

Funny thing is that 99% of the people I speak to who were born in USA don't know what celiac disease is; but I spoke to the Polish lady next door who still has an accent and she knew right away what celiac is. Go figure!

It's up to us Celiac Ambassadors to enlighten the masses. It appears that all of the celiac disease non profit orgs are not going to do a commercial or magazine advertising any time soon. We have to "hit the streets" ourselves.
  • 0
Husband has Celiac Disease and
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006
It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

#5 plantime

plantime

    My two handsome grandsons

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Posted 21 April 2004 - 06:26 AM

A wonderful lady that I love to visit with at church got an education on celiac disease at our ladies meeting last night. The only thing on the refreshment table that I could have was a cup of Sprite, and she asked why I wasn't eating anything. I make it a point to tell as many people as are willing to listen!
  • 0
Dessa

The Lord bless you and keep you; the Lord make His face shine upon you and be gracious to you." Numbers 6:24-25


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